Day 365 - What did you do this past year?

So you may be wondering where the journey has been going since June.  For those of you just tuning in we are one year in to a 2+ year treatment plan to #BeatLeukemia.

As this post is being written, I recall where we were a year ago.  I also reflect on the 364 days that followed.  As you know Anna's Journey has been filled with ups and downs to say the least.

I think of a then 8 year old who sat bravely in the hospital on Halloween and the following day when under anethesia for a bone marrow test.  Who then broke down screaming and crying in our arms when she heard that she had Leukemia.  Once past the tears she prepared for the battle of her life and handled it like I never could.

This horrific moment one year ago however brought us love and compassion in ways we never could have imagined.  From our families and friends to the overwhelming support of a community. You all followed and supported us in ways we could never express enough gratitude for.

So what's happened since June?

Anna ......... 

Went to Prom @ Sloan

Prom with Queen Dr Kobos & Leukemia Team

Got A Pool!!!!

Did Some Rock Climbing (AKA Physical Therapy)

Planted A garden

Took some selfies!

Went on a huge construction site in NYC!

Got her port removed!

Went to a Yankee Game!

 

Went to MAINE!!!!!!

Ran in the Ocean for the first time in a year!!

Lobster YUMMMMMMM

WENT BACK TO SCHOOL!!!! 

Met LUKE BRYAN !!!

During all of this Anna has been a real Warrior.  She has spent many days and nights in and out of the hospital, experienced multiple seizures, received many chemo treatments and so much more.  We are so proud of her and Thrilled for the exceptional care she is receiving at Memorial Sloan Cancer Center.  MoreScienceLessFear  She is still  in REMISSION! and we are hopeful it stays that way!!

Thank you will never be enough to all who continue to support her....But Thank you !

Day 170 - Chemo Part 4

Today is April 14th and Anna is about to start her next round of chemo.  Plus we await the results of another bone Marrow Test to make sure she is still in remission. We left home at 6am and drove to NYC.

So today is a packed with a lovely cocktail of Chemo's.  Yeah Chemo's plural!!! 

2 - injections (one in each thigh) of Erwinia

1 - dose of cyterabine via spinal tap
1 - dose of cyterabine via IV

1 - dose of cyclophosohamide via IV

1 - dose of Thioguanine by pill

They day started like any other at the Memorial Sloan.  A quick check in with the Leukemia team.  They always like to make sure that Anna is well enough for her drug mix.  As always she's great and ready to go.  Anna went under anesthesia and did great.  While she was knocked received cyterabine and they drew her bone marrow to test.  1 down, 4 2 go!  All day she was happy as a clam even though she couldn't do much.  She was monitored all day as she was getting her meds. Each one had a different monitor period.  Some were 1 hour others were 2.  It was a very long day and there was little to no complaints at all from out favorite 9 year old. 

just a few bags of meds making there in through her port 

Caught an early morning smile.  My favorite thing in the world. 

Getting de-accessed.  Finishing up the day!!!  

#821ForAnna

#BeatLeukemia

#Love

Day 116 - 118 Continued - THE CINCINNATI Effect

Arriving at Cincinnati Children's Hospital after 14 glorious hours in the car, we were greeted by Dr. Stella Davies & Dr. Christine Phillips.  In our first meeting they explained why they were concerned with the results from Maria Ferari.  They expressed that they were not convinced that Anna had any cancer in her body at all.  In fact they were suspecting that what MFCH was seeing were something called Hermatogones.  These are normal cells that grow in the bone marrow and can become present after a round of Chemo, but they wanted to make sure.  So the following day, 6:30 am Thursday - Anna saddled up for ANOTHER bone marrow test.  As usual she was fantastic!

The CCH team that morning was amazing.  It showed us how much more advanced this facility was VS MFCH.  The cleanliness was over the top positive, and how they cared for the patient was extraordinary.  It was becoming more and more clear that perhaps we were not in the best place for Anna back home.  There was a reason they were # 1 Cincinnati Children's

So the procedure was over and now we wait 24 hours for the results.  What's the best thing to do while you wait for results? Go to the Newport Kentucky Aquarium of course.

Now the following morning we eagerly await the results. They say with and as told us thy Anna is in Remission and does not need a bone marrow transplant. At first we were taken back as we now have trust issues. But after they reassures us that there is an additional data point telling them the same things we were relieved, ecstatic, elated.... Ok ok we were happy! In addition to telling us that, they also shared that they dug back to the beginning of Anna's treatment and reviewed images and actual slides. What this allowed them to tell us is "Anna has been in remission since day 29" The team at Maria Ferrari was WRONG since then. 

So now what? Clearly we were no longer comfortable at MFCH and moving to Cincinnatti for the next 2 years is not ideal. So Dr. Davies suggested Memerial Sloan Kettering in NYC. She's is friends with the head of transplant there. We concurred and she then put the wheels in motion to connect us with that team. 

Off to celebrate now! Where too? The Cincinatti Zoo. It was awesome. 

#AnnaIsAWarrior

Day 116-118 State of Confusion

So we've spent some time battling insurance companies to find out if we could have Anna's bone marrow transplant performed at Maria Fareri Children's Hospital.  The answer was a consistent NO!  However insurance never said she they would not pay for a transplant, but they just would not pay for it there.  That left us wondering why?  The more we dug the more we learned that often insurance companies will not pay for a bone marrow transplant because of the FACILITY not being a FACT accredited facility.  It has nothing to do with Dr's accepting insurance at all.

Learning more about the FACT accreditation it seemed almost as good thing that we were denied the transplant there as it opened up a world of other options.  Now knowing where insurance would cover the procedure, we started to explore and found out the #1 hospital for children's cancer care is Cincinnati Children's Hospital and insurance would cover Anna there.  We figured if now left with having to choose a location, why not go for the best available!  Quickly we engaged with the head of their Bone Marrow transplant team who immediately was concerned about Anna's case. I prepped Dr. Stella Davies about Anna's case from start to finish and prior to getting all of Anna's files she stated the she was "very anxious" about Anna's case.  This was on a friday, the same day Anna had gone in for another bone marrow test at Maria Fareri.  At this point we had made the decision to visit CCH to meet Dr. Davies and her team, so we could make sure that we were comfortable getting her transplant there.

The weekend passed and we awaited the results from MFCH bone marrow test.  Mid monday morning March 3rd, we get the news that Anna is presenting more cancer than she had previously.  This was so heart breaking to hear.  I now re-enaged with Dr. Davies right away.  She now again expressed her concern and recommended we get to them ASAP to retest Anna, since CCH was not convinced as to what MFCH was seeing, nor did they feel that we should be hinging a major life altering decision like Bone Marrow Transplant, based only on one set of eyes reviewing Anna's results.  After a few minutes of discussion we discussed driving all the way to Cincinnati to get Anna retested.......Just to be sure

To be Continued.....

Day 110 - Insurance Says NO to Bone Marrow transplant!

In  the US today, Health Care has become extremely complicated.  Even more so, the logic of decisions that insurance companies make are, well, illogical!  Let me paint you a brief picture.

If you are reading this, you probably have spent some time on the blog and know that Anna has been getting her treatment at Maria Fareri Children's Hospital in Valhalla NY.  You also know that a 9 year old battling Leukemia is braver than any adult could be.  Now while Anna is the bravest little girl you could ever meet, she also is still only 9 and has become accustom to the "New Normal".  She is used to the frequent friendly faces at MFCH and the Clinic.  In fact I know how comfortable she is based on a statement the night of her seizure, while at Norwalk Hospital.  Anna said "I want to go to my hospital."  I applaud all of the health care professionals that have made our little girl feel as if their hospital was her home away from home.

Ok, so here is where modern insurance makes no sense.  Just in the past few days Anthem Blue Cross Blue Shield has advised that they are "Denying" Anna's bone marrow transplant. Why you ask?

Perhaps it's because Anna is on some experimental treatment plan?......NO, she isn't
Perhaps it's because we have exceeded our yearly expenditure?.............NO we haven't
Perhaps it's because all of the Dr's Anna has seen since her diagnosis are not covered by the insurance?.....NO that's not it either.

It is because Anthem BCBS has a list.  And on that list it doesn't not have MFChildren's Hospital as an "Approved Transplant Location"

So what does that mean?  it means we can choose a hospital and a team of doctors, who do not know Anna, who have not been administering Anna's treatment, who do not understand how to relate to her, who look at her as patient ABC123, where Anna knows no one, where our family has to spend a 6-8 week time period away from home and work in a location that is more inconvenient and add additional stress to our lives during an already extremely stressful time.  But I guess that's just the way to rules are now written.

Well we are not standing for this. Anthem BCBS needs to now, that not only are we going to Appeal the decision, but we are Also in touch with The Leukemia & Lymphoma Society, Connecticut Department of Insurance, Patient Advocate Foundation and Cancer Legal Resource Center to help them understand that this is not ok.  
It is absurd that a health insurance company wants to dictate who can do this procedure.  Especially for a 9 year old.  How can ask parents to pick up there child and take them to a new place with new people, who you know nothing about who will perform a procedure that is to save your child's life.  I don't get it!  I hope they reconsider.  HELP NEEDED. Please post a link to this blog on BCBS FB and Twitter Page and ask them to reconsider.

#821ForAnna

Day 81-85 - Hospital Days

Anna started her 2 round of Chemo and she's kicking ass! Not one compliant this entire hospital stay. She was happy and full of energy. The week was much better than any time we had ever spent in the hospital before.  We were so luck there were not any complications this time around.

Aside from getting chemo here's all the other things that happened this week.

Wished upon a star!

  

Posed for a picture with her Dr's

Kicked A$$ Playing Trouble

Drove  fire truck

Played with Old Friends

Made New Friends

Met and Army Guy! (She was bummed that he was not single or as she said "Tooken") 

Made Ridiculous Faces

Learned how to give her self and injection on an orange

                                           

Day 79 - CHOP-it like it's hot!!

Today we took a road trip to the land of brotherly love.....PHILLY!  We were very fortunate to get connected with one of the nations finest Leukemia doctors. Dr. Susan Rhiengold at the Children's Hospital of Philadelphia CHOP

Having to make a decision that can affect the outcome of your child's life is the scariest decision you could ever have to make.  We wanted to be well informed and compare notes from one great hospital to another.  The night previous we explained why we were going to Philly.  Anna took it better than you could expect.  When we finished trying to be responsible parents she said "Ok, I'm getting tired.....Can we read now?"  Clearly she has no fear.  It is amazing.

We hit the road from Wilton, CT at 5:15am for an appointment in downtown Philadelphia at 9am.  It wasn't a bad ride, just a few dozen stops for the bathroom along the way :)

As we arrived at the hospital around 8:45 am, we were awe struck. The facility was breathtaking!!   As we entered one of the largest and oldest childrens hospital in the world, we were greated with nothing but the best treatment.  From check in to check out.....Amazing

Collectively with the help of CHOP and Anna's current Dr's we came up with a treatment plan. After long discussions talking about 15+ different Chemo drugs and protocols and side effects and "What If's" and and and....We pray that we made the right choice.  Part of that plan means a Bone Marrow Transplant for sure! Great news is Anna will be treated close to home at Maria Fareri Children's Hospital

OK, we now headed of to the Adventure Aquarium in Camden NJ for a fun filled afternoon.  It was pretty awesome!!  Anna loved it.  We saw Hippos, Sting Rays, Penguins and so much more.  I loved seeing her love the day! 

Help Anna by joining the Donor Registry and #GETSWABBED  live at https://www.facebook.com/events/600218223406612/ or virtually at BeTheMatch.org

Thank You

Anna with Dr. Rhiengold

We were looking for a frog.  Love her!!!!

Getting her art on at CHOP

Kid even loves fake dogs!!!

Day 72 - Baby It's Cold outside!!

Today was extraordinary!  We were blessed that a local Triathlon coach Eric Hodska honored Anna at his annual Polar Plunge.  In case you are numb to what this is (pun totally intended) it is when a bunch a crazies jump in to ice cold water at the beginning of a new year in honor of a local person in need.  

We were contacted about this event about a month ago and were speechless when Eric asked honor Anna.  It all sounded great but seeing it in action was breath taking.  We showed up at Southport Beach in Fairfield CT.  (A beach I know so very well, as it is part of my bike training route.) on Saturday January 11 8:20 am.  It was a foggy morning and the wind had kicked up the surf at the beach.  Not something you typically would see this time of year. There was not a soul in sight!  I was kind of surprised since the event start at 8:45.  Then at about 8:35 a big parade of cars started to roll in, almost on Que.  It was amazing!  Before I knew it the beach was crawling with almost 100 people all there to support Anna in her fight against Leukemia.  It was such a great feeling to see all the love and support.  Lots of familiar and new faces were on the scene.  I will never forget the feeling of this morning.

At 8:40 Eric quickly gathered the crowd and had some heart warming words to say about Anna.  It was hard to hold back the tears.  Anna was so proud, it was written all over her beautiful little face.  Shortly after the heartfelt words, we were told to get our bathing suits ready!  At 8:47 we took a picture and then there was a count down from 5...4...3...2...1 PLUNGE!  And off we went.  The water was a frigid 36 degrees!  For the 15 seconds I spent in the water all I could think about was how much pain Anna has and will have to deal with.  It made the pain I felt from the cold water seem inconsequential.  We all screamed going in and coming out.  I dried off and looked for my beautiful little girl and she was smiling form ear to ear.  It warmed my heart and my feeling of pain from the cold waters seemed to disappear.  After we thanked everyone I went to Anna in the car and she for the first time that I can ever remember blew me a huge unsolicited kiss which came with a huge smile.  She was sooooooooo happy!  I wish I had a camera for that moment.  I will never for get this for the rest of my life. 

Thank you to all that have and continue to keep Anna in your thoughts and prayers.  We are so blessed to have a phenomenal support team.  From our family, to friends and even our local community I say WOW and Thank you.  The journey is not over and it is guaranteed to be even more difficult than expected, but Anna is up for the fight!  And this blogger will do anything possible to make sure that I am there for her on the battle field ever step of the way!  Today that battle field was a balmy 36 degrees in the Long Island Sound.

I love you Anna and always will!!!! XOXO  #821ForAnna

Pre Plunge Talk and Photo

Getting ready!

And We're OFF!!!!

The exit!!!!!!

ITS COLD!!  AHHHHHHHHH!!!!!!

Hardcore hanging in the Sound

Anna Mom and Anne Selfie!

Anna with some of our Triathlete family!